Latin American Committee of IBE
Annual report 2006
Dr. Lilia Nuñez. President (México)
Dr. Tomás Mesa. Secretary. (Chile).
The principal activity during 2006 was de IV Latin American Epilepsy Congress, held in the Marriott Hotel,Guatemala City, organized by Dr. Henry Stokes, president of IBE Guatemalan Full Member.
During the IV Latin American Epilepsy Congress, we realized
• The meeting of the Latin American Committee of IBE to learn about the activities carried out byeach country during 2006 and to invite new people to integrate an IBE Chapter in the countries notyet incorporated.
• The Caribbean Brainstorming Session
• Presentation of the book edited by the LA Committee of IBE:”Epilepsies: All you have to knowwithout being a doctor”.
• Latin American Day of Epilepsy : Parade on September 9th, after the Congress closing ceremony.
Attendants:
Susanne Lund (IBE President)
Carlos Acevedo (IBE Vice President Latin America),
Lilia Núñez-Orozco (Chair, Regional Executive Committee Latin America),
Elza Marcia Yacubián (Vice Chair, Regional Executive Committee Latin America)
Tomás Mesa (Secretary, Latin American Regional Executive Committee)
Philip Lee (Co-Chair Global Campaign Against Epilepsy)
Nico Moshé (ILAE Secretary General)
Alicia Bogacz and Norma O Bragunde (Uruguay),
Manuel Campos, Alejandro de Marinis and Jorge Foeste (Chile),
Orlando Carreño and Jaime Fandiño Franky (Colombia),
Maria del Cármen Díaz Obregón (España),
Julio Espinoza (Perú),
Laura Giulhoto and Li Li Min (Brasil),
Beatriz González del Castillo (Venezuela),
Salvador González Pal (Cuba),
Natalio Fejerman and Silvia Kochen (Argentina),
Marco Tulio Medina (Honduras), .
Galo Pesantez (Ecuador),
Henry Stokes (Guatemala),
Diógenes Santos Vilorio (República Dominicana).
Apologies: Ernesto Triana (Panamá), Claudia Amador and Reyna Durón (Honduras),
Chair: Dra Lilia Nuñéz
After a welcome from Lilia Núñez, Susanne Lund informed about changes in IBE:
modernization of IBEwebsite, the presentation of the new editor of Epilepsy News (Dr. Carlos Acevedo), the new office in Dublinand the announcement of projects including Promising Strategies, with 23 applications, 9 from LatinAmerica, active participation in International Epilepsy Congresses and the creation of the Volunteer Award.
Philip Lee talked about the advances of the Global Campaign, Demonstration Projects in Latin America andplans for raising funds; Dr. Carlos Acevedo mentioned the growth of the Latin American region.
The members of the Latin American Committee of IBE gave detailed information about their local activities,
as outlined in the attached report.
Introductions of those invited to the meeting of the Latin American Regional Executive Committee:
• Dr. Li Li Min, from ASPE, of Brazil, informed about on-going project of stigma and invited theother LA countries to collaborate.
• Dr. Orlando Carreño, neuropediatrician from Medellín, Colombia.
• Dr. Nico Moshé: Saecretary, Executive Committee of ILAE, will play as a link between ILAE and
LA Committee
• Mrs Norma Bragunde, voluntary worker in Uruguay.
• Dra Claudia Amador, neurologist in Honduras.
• Dra Reyna Durón, secretary of The Academy of Epilepsy in Honduras. Both have the intention tofound the Honduran Chapter of IBE.
• Dr Marco Tulio Medina, president of the LA Commission of ILAE, propose the integration of this
Commission with the LA Committee of IBE and the foundation of the LA Academy of Epilepsy for
a comprehensive work in epilepsy.
• Dra Elza Marcia Yacubián, vicepresident of the LA Committee of IBE announce the project ofintegration of all Portuguese-speaking nations (Angola, Mozambique, Cabo Verde, Brazil andPortugal) for education on Epilepsy. The LA School of epilepsy will be held on February 2007 in
Brazil.
• Dr. Carmen Díaz Obregón, chair of the Global Campaign in Spain inform about courses on epilepsyfor gynaecologists, women, pharmacists, judges, among other groups of interest
• Dr. Alejandro De Marinis, director of the Chilean League against Epilepsy coordinates the Medical
Center that attends patients, realice research works as web as educational programs forpostgraduate students in different Universities
• Dr. Manuel Campos, Vicepresident of the Chilean League Against Epilepsy, emphasize theimportance of differential diagnosis between epilepsy and non epilepsy.
• Dr Ernesto Triana, from Panamá, Governor of Lyons Club, suggested making a project of supportfor people with epilepsy from this organization in different countries.
• Dr Natalio Fejerman gives a greeting to all LA countries.
Caribbean Brainstorming: This was a panel of discussion planned by IBE and ILAE because of theirconcern about the small countries of Caribbean region that do not belong to the North American regionneither the Latin American Region. After the discussion of different aspects, the conclusion was that theCaribbean countries should be incorporated to the respective committees according to language and culture.
Philip Lee presented a report with conclusions that is attached (II) to this general report.
Presentation of the book Epilepsy: all you have to know not being a doctor.
Dr. Lilia Núñez representing the editors (Dr. Manuel Campos, Dr. Carlos Acevedo) and the LA Committeeof IBE made the presentation of this book written with the collaboration of many Latin Americanneurologists and neurosurgeons to inform people with epilepsy and relatives about this complex problem ofepilepsy, using a simple language to approach all aspects of epilepsy.
The first edition was of 1000 issues. The LA Chapters will edit the revised book in their countries and itwill be available on-line.
IBE CHAPTERS REPORT
MÉXICO: Group “Acceptation° of Epileptics (GADEP) Mexican Chapter of IBE. President: Dr. LiliaNúñez-Orozco
• Informative sessions about Epilepsy the first Saturday of each month, with attendance of 180-200persons since 1991.
• ID for members of the group in order to get special prizes in medication, free public transportation,etc.
• Weekly Workshops to improve self-esteem and emotional state, since 2005.
• Advertisement of the activities of GADEP through posters located in Metro Stations in MexicoCity.
• Website that receive an average of 2000 monthly visits, since 2001.
• Day for persons with epilepsy and relatives during the Annual Congress of Mexican ILAE Chapter
Aguascalientes, July 2006
• Virtual Congress of Neurology, week on Epilepsy and Comorbidity, august 2006, available in
• Symposium on Epilepsy. Pachuca, Hgo., for Health workers, October 2006
• Symposium on Epilepsy. Hospital Psiquiátrico Fray Bernardino Alvarez. October 2006
• Workshop Epilepsy in the elderly. XXX Annual Meeting of the MexicanAcademy of Neurology.
Mérida, November 2nd, 2006.
CUBA: Dr. Salvador González Pal, President of Cuban Chapter of ILAE and IBE. Coordinators of IBE:
MSc. Justo Reinaldo Fabelo Roche Lic. Serguei Iglesias Moré
The prevalence of Epilepsy in Cuba is 3.3-6.8/1 000, and an incidence of 17-20/100 000, among a totalpopulation of 11 million.
The IBE Cuban Chapter vas founded in 1987 with Health workers, teachers, lawyers, journalists, patientsand relatives interested in social problems of Epilepsy.
Participation in Global Campaign since 1997 developing several activities on education to healthprofessionals, self-help groups and diffusion through communication media well promotion of research on epilepsy with publication of articles and books.
Current activities
• Self-help groups of 30-40 persons in 2nd and 3rd Level Hospitals
• Annual educational programs for general physicians and other health workers
• Publication of the book: Psychology of Epilepsy. Author: Justo Reynaldo Fabelo Roche.
• Publication of pamphlets: All you have to know about Epilepsy. Dr. Salvador González Pal, (inpress).
• Ongoing Research projects
o Quality of life in Epilepsy
o Costs of Epilepsy
BRAZIL:
Dr. Laura Guilhoto, president of the Brazilian Chapter of IBE (Brazilian Association of Epilepsy).
• Educational activities for physicians, people with epilepsy, relatives.
• Leisure activities for people with epilepsy
• Presentation of handcrafts made by people with epilepsy in Brazil as one of the activities.
• Validation of inventories for research in quality of live and stigma-
• Project of application of the intervention program Modular Service Package Epilepsy (MOSES)developed by Margarete Pfaefflin in Bethel to develop an intervention program for treating socialstigma in people with epilepsy
• On-going Research projects on different aspects of epilepsy.
• School of Epilepsy next February 2007.
CHILE: Dr. Jorge Foester, president of ANLICHE (National Association of Chilean Leagues against
Epilepsy), Chilean Chapter of IBE.
ANLICHE gathers 20 institutions, associations and groups with 200 Voluntary workers, 25 voluntary
Neurologists distributed in different sites located on Santiago (Providencia, Maipú, La Florida, Las
Condes, Center of Comprehensive development, in Spanish Centro de Desarrollo Integral CEDEI and
School-Workshop od Differential Education) and other cities or regions: La Serena, Curicó, Talca,
Concepción, Temuco, Copiapó, Arica, Iquique, Antofagasta, Valparaíso/Viña del Mar, Chillán, LosAngeles, Valdivia, Puerto Varas, Puerto Montt y Punta Arenas. The leader is the Chilean League against
Epilepsy (LICHE)
Current activities:
• Health Services
• Social Programs and monetary assistance
• Educational programs on Epilepsy for the community.
• Diffusion on Epilepsy through communication media.
• Capacitation for work insertion
• Self-help Groups
• Young people groups and training for monitors
• Special Education for groups of special needs.
Activities for Children
“Learning playing”. Summer activity – January 9 -13– CEDEI
Niños entre 7 y 12 años con epilepsia: Trabajo en grupos, Paseos, Concursos, Obras de Teatro.
Meeting for Parents
August 26th 2006.Objectives. Reinforce the links among family members and improve the acceptation ofepilepsy in all family members.
Educational Activities
• Symposium Child Epilepsy and learning March 31st, 2006)
• IV International Symposium on Epilepsy (April 28 – 29, 2006)
- Epilepsy and special groups: women and elderly
- “Antiepileptic drugs”
- “Epilepsy and Psychiatry”
• Collaboration with Health Ministry on Education for primary care physicians in the Program Nonrefractoryepilepsy.
• Courses: Epilepsy for Teachers in Santiago, Concepción, Temuco, Curicó, La Serena
• X Annual Meeting ANLICHE. Tomé - April 21 – 23, 2006
• Epilepsy for Voluntary workers. Social Activity to reinforce motivation to this group of 120medical and non-medical voluntaries-
Regional Meetings “Young people for Healthy Epilepsy”
2nd Metropolitan Meeting May 27, 2006 “Building the Future II” regional Meetings in Concepción yTalca.
LICHE organized workshops about myths and realities on epilepsy, contribution of young people tosociety, epilepsy in Human History, young people searching identity and a future
Latin American Week:
• Third Celebration of the Latin American Day with the participation of the Ministry of Health,Epileptology Chilean Associetion and ANLICHE. Epileptología de Chile y ANLICHE.
• Voluntary workers visited hospitals and organized leisure and educational activities in the sites ofANLICHE.
• Workshops of Child painting and a Contest of children drawing “Let’s paint Epilepsy II”
PERÚ: Dr. Julio Espinoza, president of the Chapter of IBE in Peru.
• This chapter was restructured after 6 years of being inactive
• Educational courses for non-neurologists
• Academic meetings with other scientific associations.
• Educational journeys to health workers in different cities.
• Epidemiologic survey of people with epilepsy accounting people that receive antiepileptic drugs.
GUATEMALA: Dr. Henry Stokes, president of the Guatemalian Chapter of IBE and President of the IVLatin American Epilepsy Congress.
• Educational courses to specialists
• CDs teaching Epilepsy in different Mayan languages.
DOMINICAN REPUBLIC: Dr. Diógenes Santos Viloria, president of the Dominican Chapter of IBE.
Teaching Epilepsy to medical students.
Help to Haiti
ECUADOR: Dr. Galo Pesantez Cuesta, president of Ecuatorian Chapter of IBE
• The Ecuatorian Chapter was founded in 1991, integrated for the Association of Parents of Childrenwith Epilepsy and the National Center of Epilepsy, non-profit associations that gather up to 8000patients.
• Activities.
• Health services
• Diffusion of Epilepsy to the community
• Research studies
• Publication of articles.
• Program to provide antiepileptic drugs to 500 people without resources.
• Book: Epileptology and Child Psychiatry (EPILEPTOLOGÌA Y NEUROPSIQUIATRIAINFANTIL), author Dr. Galo Pesantez and Monica Ríos.
• Research collaboration of the National Center of Epilepsy with BostonUniversity (project:
“Prevention of Epilepsy erradicating Neurocysticercosis”)
• Project: “Development of psychomotricity” with the International Organization of
Psychomotricity and the Universitiy of Paris.
• Project Study of psychomotor disorders with the University of Verona.
COLOMBIA: Dr. Jaime Fandiño Franky, president of Colombian Chapter of IBE.
Current Activities:
1. Legislation project for protection of people with epilepsy
2. Creation of a National Prize of Epilepsy for young researchers, especially on rehabilitation andmedicine.
3. Colombia has an educational program to avoid alternative medicine. All epileptic patientreceivemedication and medical attention for diagnosis and
4. Program on Epilepsy surgery since 1989 (#704)
5. Programs on Rehabilitation in different sites of Colombian League against Epilepsy
6. The Colombian League against Epilepsy is actualizing its internal law to agree with the ILAE and IBE.
URUGUAY: Dr. Alicia Bogacz, President of the Uruguayan Full Member of IBE:
• This chapter has been recently founded and will participate in the organization of the next V LatinAmerican Congress of Epilepsy on 2008.
• This chapter will host the organizing meetings before the Congress.
• Dr. Bogacz invited the other chapters to attend and participate.
ARGENTINA Dr. Silvia Kochen, representing the FUNDEPI (directed by a patient), friend of IBE,informed that this association is directed by a patient with epilepsy. Argentina has achieved thepromulgation of the National Law of Epielpsy. They hope this law will be applied in daily practice
VENEZUELA: Dr. Beatríz González del Castillo, President of the Venezuelan Chapter of IBE
This chapter gathers 19 chapters, 7 belonging to the IBE. The Group of Friends of People with Epilepsy
(GAPE) was founded on 2995.
Current activities:
1. Educational programs for community: “Out of the shadows”. Lectures of Neurologists and otherspecialists to talk about different aspects of epilepsy as quality of life and human rights of peoplewith epilepsy related to insurance.
2. Workshops for training teachers in Caracas covering 40% of educational institutes in Caracas,
3. Research projects to improve quality of life
4. Purchase of a building for the Venezuelan League of Epilepsy (LIVECE) with modern equipmentto attend people with epilepsy.
5. Development of the website of LIVECE.
6. Participation of people with epilepsy in theatre performances presented in different regions.
7. Project National Plan of Epilepsy for Venezuela to improve the quality of comprehensive attentionof people with epilepsy.
8. Participation in a website on epilepsy with national radio transmission every Monday.
Attachment II
Caribbean Brainstorming Session
9 September 2006
Discussion Group Outcomes -
Consequences of the Santiago Latin American Declaration on Epilepsy
Positives
♦ The 1st Latin American Congress in Santiago was, and still is, a great impetus to the LatinAmerica region. It brought the region together, gave it an identity, inspired people and illustratedwhat was possible to achieve.
♦ The Latin American declaration has had a consequential impact on the organisational structure ofboth IBE and ILAE by highlighting the importance and value of regional activity. Since this andother declarations, both IBE and ILAE have changed their constitutions and now bothorganisations reflect a much more regional approach in their structures.
♦ At a primary level things are happening. Demonstration projects are taking place – such as inBrazil – and other activity have been stimulated. It needs to be recognised however that it will takea long time for things to change.
♦ One of the declaration’s calls was for countries in the region to adopt a national plan for epilepsy.This has been happening. Brazil, Chile and Costa Rica at least have such a plan. However,merely having a plan is not enough. The plan itself needs to be monitored and evaluated to ensureit delivers better care and access to services.
Negatives
♦ There is very little reliable research data on epilepsy in the region. Even basic epidemiologicaldata does not exist. Without knowing even prevalence and incidence rates, there is no way toscale the size or scope of the problem. There is no benchmark data against which to measureprogress, so even if things are improving, there is no way to evidence that. Similarly there is nodata on stigma issues or quality of life generally. This was considered to be the single biggestobstacle to progress in the region.
♦ Doctors do not think in term s of concepts, campaigns or declarations. Most are simply too busyjust caring for their patients and earning a living. They do not have time to be too conceptual.
The declaration may therefore not seem relevant to them and its impact at grass roots andindividual level is therefore diminished.
♦ Epilepsy lacks funds to do things. Pharmaceutical companies in particular are reducing theirexpenditure on epilepsy. Epilepsy’s lack of funds is especially apparent when compared toother health conditions like cancer and vascular disease. Lack of funds significantly limits whatcan be done.
♦ Other health conditions – like HIV, cancer and vascular disease – are given a higher politicaland financial priority than epilepsy. This makes it harder to implement the declaration.
♦ There are huge economic differences within the region. Differences exist from country tocountry and within countries between different regions and different socio-economic groups.
This spectrum from huge wealth to great poverty means there are wide ranging perceptions andexpectations about epilepsy and care for people with epilepsy. It means that people’s needs arevery diverse and there is no universal solution.
♦ Overall, it was felt that the Global Campaign as a whole was beginning to lose some of itsmomentum. PAHO in particular is very unsupportive of the Campaign and disinterested in itsactivities. Epilepsy does not appear to be such a high priority within WHO as it once was.
There was a feeling that WHO as a whole had perhaps moved on from epilepsy to other things.
Without PAHO support, the declaration becomes more difficult to follow.
The group made three specific recommendations for action: -
1. There should be a survey of all countries in the region to report on what progress they hadmade in relation to the principles of the declaration.
2. IBE/ILAE must get PAHO more involved and supportive of the Global Campaign. Contactsneed to be identified within PAHO, starting with the Regional Advisor for Mental Health.
3. Good quality research is required to provide reliable and accurate data about epilepsy in theregion.
Philip Lee
15 September 2006
LA COMMITTEE OF IBE - PROJECTS FOR 2007
• First organizing Meeting in Montevideo for the V LA Epilepsy Congress March 17th, 2007
• Participation in the IBE website with a LA section
• Participation in IE News, Spanish section.
• Edition on-line of the book: Epilepsies: all you have to know not being a doctor. Supportedby our budget-
• Edition of the book in each interested country with own funds of that chapter supported bya sponsor.
• Participation in a Special interest group symposium with the LA Commission of ILAE:
Alternative treatments in Epilepsy during the International Epilepsy Congress in Singapore
• Dr. Lilia Núñez-Orozco, Dr. Alicia Bogacz from IBE and Marco Tulio Medina and Franz
Chaves from ILAE
• Meeting of the LA Committee of IBE during the International Epilepsy Congress in
Singapore, July 2007.
• Multicentric research projects currently in evaluation to support with our budget.
• Reinforce the Global Campaign with the collaboration of PAHO in all LA countries.
• Foundation of new IBE chapter – the first one in Honduras.
Dr. Lilia Núñez-Orozco, President.